Sometimes things seem overwhelming

(Please excuse my spelling errors and lack of capital 'i's. i am working on a computer with a broken keyboard. Madi gave my laptop a little shove off the counter and it no longer works)

As many of you know, we are trying to buy a new house. We found one that we both absolutley love, but the problem is that we want to be able to live without relying on David's bonuses. David's bonuses are based on his trading in the market. Some quarters can be amazing. Other quarters David goes in the negative, as do his bonuses. He's done great and God has really blessed us, but it is not income we can rely on. We thought we would be able to afford the house we put an offer on based on his base salaray, and last month, though it would have been tight, we could have done it. This month, things look very different. Right now we are really searching out what God wants us to do. There have been other houses we loved and every time, the door gets shut. We've been looking since May, living with my parents, and we are just very frustrated right now.

So what has happened in this past month to change our monthly expenses so much? The care we rely on for Madi is changing. To start with, Madi had AHCCCS (state healthcare) for one year, which has ended. They picked up what our insurance didn't, which was amazing considering our three big, and expensive, hospital stays. You do not get on AHCCCS for disability, only for financial need, which we do not have, so getting back on AHCCCS at this point is not possible, though if we pay out enough in medical expenses, it may be. Next up comes CRS (children's rehabilitative services). Because we are no longer on AHCCCS, we are no longer accepted at CRS, which means no more help with her many doctor's visits. And, lastly, comes DDD (Department of Developmental Disabilities). Since the state is broke and they do not know where to go for their money, they are switching to a sliding scale paymetn system, which means instead of picking up our $35 co-pays, three times a week for Madi's therapy sessions, they will pick up a portion of those and we will pay a portion (or all). Also, Tami, Madi's physical therapist, is out-of-network and is not paid for by insurance until we hit double our diductible, or $5,000, and DDD was paying for her to come until our insurance kicked in. Madi does not yet qualify for Arizona Long Term care as Spina Bifida is not a disability that automatically qualifies you, like autism and other disabilities do. She will eventually get in, unless it goes bankrupt like so many other programs, but it probably won't be for another few years.

So what does all this have to do with our house, you ask? We had already budgeted for our health insurance, which is $400 a month. We also budgeted for $35 co-pays for Conner's doctor visits and our doctor visits. We do not have dental or vision insurance, so that is also something we had budgeted for. We had not, though, budgeted $35 per therapy, three times a week ($105 a week total, $35 doctor co-pays every time we go in (some weeks we don't, some weeks we have 4 visits), money for AFO's, wheel chairs, prescriptions, walkers, standers, and all that other good stuff. Based on that, we need to budget in around $500 a month extra for medical expenses, plus have an emergency medical fund for hospital visits and equipment she will need, as well as money for making whatever house we get handicap accessable. That $500 is just bare bones medical, not including heatlth insurance. Realistically we'll be more around $600 a month. That, combined with what we pay for health insurance is, literally, a third of David's monthly pay.

Looking at all of this has made us realize a few things.

#1- We are very thankful for the assistance we were getting.

#2- We need to be very careful with our spending. We live pretty cheaply as it is, but we need to cut back more. We don't eat out often, i don't get my hair, nails, or toenails done, we don't go to the movies, we try to buy the kids clothes used, but we have this crazy Costco addiction ;). We have the Dave Ramsey system and are going to sit down this weekend and figure out a budget. We are going to stop using credit cards (we pay them off in full every month to get the cash back, but i know this causes us to overspend) also. We are going to an all (or mostly all) cash system so we can monitor our spending very carefully. We hope to be able to cut some corners and make it work so that we can get this house without relying on bonuses, but because of the additional $500 a month (roughly) we will need for medical, i am not sure this is possible.

#3- We are so very thankful God has blessed David with a good, stable job.

#4- it is very hard to raise a special needs child without government assistance, which is a fact that i absolutely despise. i do not want to NEED help raising my child. i don't want to have to rely the government for her care. i do not want other people getting to decide her quality of care or quality of life.

#5- We need to do some big time praying!

#6- We may need to find another, and cheaper house. One reason why we loved this house is because it is a custom home and, therefore, has wider hallways for Madi to navigate through. The kids bedrooms also have a jack-and-jill bathroom, which would be so very amazing for Madi to have. i would love for her to have a bathroom close and feel it will help make her much more independent, which, in turn, will boost her self-esteem. There is also a formal living room that i would be able to homeschool out of, as well as a den for David to work out of, as he works from home 4 days a week. So, while we may not NEED those things, they would make life so much easier. We are really bummed we may need to walk away from this one.


We are supposed to hear back about the house any day now, and really need to know what we are getting in to first. As i sit here typing this and look down at Madi's beautiful sleeping face, all i can think of is how much she is worth it all. God has always taken care of us and we know He is not going to stop now, but we need to make wise choices with the resources He has blessed us with. We are praying really hard right now for direction with where He wants us to go. Please pray for direction as we go through our budget and make these decisions.

I am still in the editing process, but...

I am composing a letter to send to our wonderful legislators about the proposed budget cuts for early intervention (basically physical therapy, occupational therapy, etc...).  They initially tried to take away all services our special little kiddos receive, but that will illegal and didn't fly.  Now, in addition to major budget cuts, they are saying they may have parents pay a percentage of it.  I know it doesn't seem like much, but when you already pay for private insurance and the millions of other little things that go along with having a child with special needs, it adds up very quickly!  For us, we pay $450 a month for insurance.  Our deductible is $2,500 a year and our co-pay is $35.00.  Madi receives physical therapy and has a developmental specialist for an hour a week.  She also will be starting occupational therapy.  Currently, the Department of Developmental Disabilities pays for the amount not covered until our deductible is met and our co-pay.  I know we are lucky to have the support, but couldn't give Madi what she needs without it.  We would be paying the $450 a month for insurance and $105 a week for her services, and that's after we met the $2,500 deductible.  In the near future, when Madi needs walkers, wheelchairs, etc..., we will also be paying for that.  Then, if she ever needs to be cathed, there are those supplies, the co-pays on her medicines, adaptive things she will need for our home, gas to and from appointments, and many more expenses.  Although she is worth EVERY penny, those pennies add up quickly!  The legislators are saying they are not hearing from parents who are unhappy about the changes.  I think they forget that our time is limited!  So, pardon my long story and my spelling errors, but here is a draft of the letter I am writing.  I will be sending it to everyone I can.  I hope it inspires others out there to write a letter too.  Let your voice be heard!

Dear ,

 

I am writing to you concerning the proposed budget cuts for early intervention programs in Arizona.  I am a mother of two and my youngest, Madilynn, has spina bifida, hydrocephalus, and a Chiari II malformation.  She is currently five months old and receives physical therapy, services from a developmental specialist, and is being evaluated for occupational therapy.  Although we pay for private insurance, we also utilize The Department of Developmental Disabilities (DDD) and The Children’s Rehabilitative Services (CRS). These services are absolutely crucial to her physical, mental, and long-term wellbeing.

 

I am an educated individual with a Master’s Degree in Elementary Education, a reading endorsement, and an SEI endorsement.  I have even taken a few special education courses at the college level and still do not have enough knowledge of how to most effectively work with Madilynn and help her live up to her full potential.  It honestly takes the efforts of trained, knowledgeable, and caring individuals, such as the ones that work with Madi, to give her the assistance she needs.  The specialists have given me ways to work with her and it is because of them that Madi is doing as well as she is.  We have seen her make tremendous strides in just the few months she has had assistance.  Unfortunately, though, when Madi meets her current goals, I will once again be at a loss of how to help her.  Both Madilynn and I need the help and support of her therapists on a regular basis. 

 

As you and I both know, money is short and changes must be made.  I am thankful that federal stimulus money is available, but know that more needs to be done.  I am asking that you will seriously consider taking money from other places so that our children can still strive and receive the help they so desperately need.  For example, instead of paying for elective epidurals for women receiving ACHHS, you can pay for something that, in my opinion, is absolutely not elective-- our children’s futures.  If Madilynn does not receive the help she needs now, her chances of walking are very slim,.  The cost in the long run will be much greater not only for us, but also for the State.  Madi is at her most critical point of development, and needs immediate, ongoing assistance.  I have attached a copy of the appeal I sent to DDD and ask that you read that for more information about that long-term costs that will arise if early intervention budgets are cut.  You can also read more about Madilynn and the amazing little gift she is by visiting www.missmadisjourney.blogspot.com.  When you make decisions regarding budget cuts, please remember my daughter and the disservice you will be doing to her, and others like her, by taking away even 10% of the budget.  Our children need you.

 

Sincerely,

 

 

 

Jamie Veprek